Susan Inman has been through a lot over the last several years, watching the terrible grip of schizophrenia on her youngest child. The Vancouver mom has seen her daughter have delusions, experience nasty side effects of countless medications, and spend long stretches in a catatonic state in hospital. It’s all been a living nightmare, but one of the hardest things Inman has had to confront is people asking her what she and her husband did to bring on their daughter’s mental illness.
“It’s really horrific to get any comment like that,” Inman tells the Georgia Straight in a phone interview. “It’s really difficult. The stigma is so huge.”
Inman’s daughter, whom she refers to publicly as “Molly”, dropped out of school a decade ago, when she was 15. At the time, she was alternating between what Inman describes as a deathlike depression and the frantic pacing of mania. Doctors told her parents that she had bipolar disorder.
Molly went on be tormented by thoughts that people could read her mind and that the radio was sending her messages. Her mood was volatile. To Inman and her husband, whose older child never had any health problems, Molly’s condition was horrifying. And, as Inman quickly learned, it was also grossly misunderstood.
In fact, it was Inman herself who raised the possibility of her daughter having schizophrenia to her doctor. He initially shrugged off the suggestion, noting that the prognosis would be too awful, before admitting he knew little about it.
Eventually came Molly’s diagnosis. It was a relief to the family to know exactly what they were coping with, but dealing with the day-to-day realities of schizophrenia proved just as trying as ever.
Symptoms vary greatly from person to person, but among the more common ones, according to the British Columbia Schizophrenia Society, are noticeable social withdrawal, depression, irrational statements, a shift in basic personality, unexpected hostility, inability to concentrate or cope with small problems, preoccupation with religion or the occult, and excessive writing without meaning.
Molly’s parents decided to keep her home with them, even though she needed constant care. She left taps running, would leave mugs in the microwave for 30 minutes at a time, and didn’t understand the risk of running out onto the road.
Through it all, Inman was astonished at the lack of resources aimed specifically at families of those living with the serious mental illness. Although things have improved over the years, Inman felt that firsthand accounts of the true course and impact of the disorder were missing. To help others in situations like her own, she wrote After Her Brain Broke: Helping My Daughter Recover Her Sanity (Bridgeross, 168 pp).
The book is a detailed account of Molly’s illness. A story that’s as fascinating as it is terrifying, it also touches on various theories related to the causes and treatment of schizophrenia, as well as the flaws and successes of the local mental-health system.
“I’m a reader, and I come to meaning and understanding through literature,” Inman says. “But I could not find any stories, at least any Canadian stories”¦.I wanted to deal with it in an open way, so that it’s not hidden and misunderstood, to tell the truth as we see it from a family’s perspective.”
As the book points out, there are still huge gaps in services for people with the disease and their loved ones. Inman, who teaches high-school English part-time, would like to see an educational system that better addresses the needs of students with severe mental illnesses.
Then there is the lack of accountability of many so-called therapists, those with little formal training who hang up a shingle and who are, in Inman’s view, largely antipsychiatry and antimedication, and who answer to no one in a field that’s unregulated. Not surprisingly, Molly had a negative experience with one such therapist.
After Her Brain Broke also examines the stigma of mental illness. It doesn’t help that high-profile cases such as that of Vincent Li, who killed a passenger on a Greyhound bus in 2008, are linked with schizophrenia, Inman says.
Here, she raises what she acknowledges is a “politically messy” and controversial stance: many people with serious mental illnesses refuse treatment, and one way to avoid the rare instances where those in a psychotic state go on to become violent, she says, is to have involuntary treatment.
Her daughter is now 25 and is generally doing well. She continues to live at home, takes a college course, has a boyfriend with whom she golfs and snowboards, and is on an antipsychotic medication.
Inman is on the Vancouver Coastal Mental Health Services family advisory committee and helps organize its annual family conference, Working Together for Mental Health. Sponsored by the Vancouver Coastal Health Authority, the British Columbia Schizophrenia Society, and the Mood Disorders Association, it takes place May 1 at Vancouver General Hospital’s Paetzold Theatre. (Details are at the British Columbia Schizophrenia Society Web site.) The keynote speaker is local psychiatrist Bill MacEwan.
Molly has spoken at the conference in the past. What makes the gathering unique, Inman says, is that it’s driven by the questions, suggestions, and needs of those who are directly affected.
“To do the best job you can for a child with a serious mental illness, learn all you can,” Inman says. “What choice do we have? We love our children.”